How I Learned to Take My Pills

Sage Advice From a Ten-Year Veteran of Various Antiretroviral Regimens

By Charles Q. ForesterFrom San Francisco General Hospital

June 1997

I was mugged twice in the late 1970s -- the first time by five teenagers who took my wallet and left me with a fractured skull, the second time by HIV.

I survived the first mugging, which occurred on my own street in San Francisco, because I managed to stagger to my own front door and ring the bell before I collapsed. My partner heard the bell, went to the door, found me lying on the stoop, and got me to the hospital -- where I was rushed into surgery.

When I came to, three days later, my partner was at my bedside -- where he had been, awake or asleep, since the moment I came out of surgery. At first the nurses had encouraged him to go home -- for a shower and shave, a change of clothes, a good night's sleep. But he was adamant: Whenever I woke, he told them, he planned to be there, holding my hand. And he was.

I had my first grand mal seizure six months later. And I had a second seizure two weeks after that. My doctors told me I might continue to have such seizures indefinitely, and they put me on two drugs that epileptics take. One of these antiseizure medications had to be taken two times a day; the other, three times a day.

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I was told that if I failed to take these drugs as prescribed, I could have a seizure at any time. This was all the inducement I needed: I became a very compliant patient, and once my doctors got the dosages adjusted, I never had another seizure.

I have survived my second mugging, in large part, because the first mugging -- and the seizures that followed -- taught me the importance of being highly compliant with therapy.

In the mid-1980s I started taking AZT, the only drug then available to suppress HIV. In those days everyone used a pill container with a built-in timer, and everyone on AZT seemed to be on more or less the same dosing schedule. During staff meetings at City Hall -- where I was the mayor's liaison to the gay and lesbian community -- I got used to hearing several timers go off about the time mine did. They also went off in movies, in restaurants, indeed just about anywhere. And whenever one did go off, I would hear knowing chuckles from those who knew what the signal signified.

As the years progressed and the drug regimens got more complicated, I found that I needed a better way of reminding myself to take my medications. Because I am both naturally lazy and compulsive about compliance, I had to devise a pill-taking routine that was uncomplicated and therefore easy to remember -- and yet ensured that I took all of my pills exactly as prescribed.

I bought a number of pill containers before I finally found the one I now use. It comes from Walgreen's and it has four compartments for each day of the week, plus a lid that snaps firmly shut. This pill container has solved a lot of problems for me. For one thing, it enables me to count out my pills for the entire week -- in advance, in a single, ten-minute session at the kitchen table. With that task out of way for the whole week, I don't need to spend any additional time reading dispensing information off bottles or double-checking my dosing schedule. I've done all that... and all I have to remember, all week long, is to take the pills in each of the four compartments -- the morning, noon, evening, and bedtime compartments -- each and every day.

Another way the pill container helps is with medicines that have to be taken in escalating -- or de-escalating -- doses over a period of several days. I can count out the right daily doses for the entire week and put them in the appropriate compartments. Once that's done, I don't have to worry about when it's time to increase or decrease the dosage of that particular drug. And because I fill the pill container for the entire coming week, I know well in advance when a particular bottle is running low and it's time to refill a prescription.

If I get off schedule with my antiseizure medications, I get light-headed -- a nasty reminder that I need to stick to my prescribed dosing schedule. With antiretroviral medications, there are no such immediate reminders -- which is why I make taking those pills an obvious and integral part of my day. Right after I brush my teeth each morning I take out my pill container and transfer that day's morning, noon, evening, and bedtime doses to individual containers, and I cover each container so that the strong sunlight that floods our kitchen does not leach the potency out of the pills.

I keep theses small containers on the kitchen counter, where I will be absolutely certain to see them at the appropriate times. If I'm going out for part of the day, I put the appropriate container in my front pocket, where I will feel it during the course of the day and be reminded to take my pills on schedule.

If I can keep to a new dosing schedule for at least a month, I find, my internal clock adjusts to that new schedule. The good thing about this internalized clock is that it alerts me when it is time for my next doses. The bad thing is that is continues to alert me even after I've stopped taking a particular medication. I'm no longer taking Crixivan, for example, but I still wake up at 7:00 A.M. every morning, right at what used to be Crixivan-taking time.

Reliable as my internal clock can be, it's not 100% reliable -- especially not on busy afternoons at the office. To backstop my internal clock, and to jog my memory, I therefore bought an inexpensive clock-radio and set it to go off every day at 3:00 P.M. The sound of soft music at midafternoon is all the reminder I need that it's time to take another round of pills.

"I realized early on that I had to get over being embarrassed about taking pills. But before I reached that point I invested way too much time and energy hiding my pills and slipping away to the water fountain or the bathroom when no one was looking. Living with HIV got a whole lot easier once I told my co-workers why I was taking all those pills. Actually, I did more than tell them -- I enlisted them in helping me remember my dosing schedule."

How to handle the workplace

I realized fairly early on that I had to get over being embarrassed about taking pills. But before I reached that point I invested way too much time and energy hiding my pills and slipping away to the water fountain or the bathroom when no one was looking. Living with HIV got a whole lot easier once I told my co-workers why I was taking all those pills. Actually, I did more than tell them -- I enlisted them in helping me remember my dosing schedule, particularly when new medications were added to it.

I figured that if others could talk of their current diet or their current relationship, I could talk about the pills I took. I found this step much like coming out; I was simply being honest about who I was. Besides, its tough enough to remember a daily dosing regimen as complicated as mine without the additional complication of trying to hide it. Nowadays I take pills in the open and without hesitation, even if I'm in the middle of a meeting.

If your work environment will not permit that degree of openness -- and I recognize that many work situations do not -- then I suggest that you schedule a regular daily work-break that coincides with the time you need to take your daytime doses. Take a few minutes to yourself, at the same time every day, so you can take your pills on schedule and in private.

"It seems increasingly clear that the three keys to survival are compliance, compliance, and compliance. All of us need to find way to stick to the demanding drug regimens that we're now on. Being organized and disciplined -- and learning a trick or two about pill-taking -- are the surest ways to beat the virus. It's not always easy, but then no one said survival would be."

Some off-the-record comments from an old hand at pill-taking

My preference is for medications that can be taken with food. That way I can give myself a treat -- a fresh-baked chocolate-chip cookie, or a fruit slush -- when I take my midafternoon pills. My doctor has been very good about prescribing combinations of antiretroviral drugs that have similar dosing schedules and can be taken with food -- which is why I am currently taking d4T, 3TC, and Viracept, all of which can be taken together and with food.

Taking pills can be a bitch, especially if, like my partner, you have to take Crixivan at 3:00 P.M. on an empty stomach and then saquinavir at 4:00 P.M. with food. There's no denying the rigors of such a schedule, but there's also no denying the rewards: he is back at the gym four days a week, and he has more energy than he's had in several years.

If a drug does not agree with you, register a compliant with your doctor. You shouldn't have to be nauseated all day long, or suffer chronic diarrhea, just to keep your HIV in check. There are enough drugs available to us now that we have a luxury we didn't have when I started taking AZT: we can consider the convenience of a particular drug regimen, and we can change that regimen if it produces intolerable side effects. These considerations should be part of your thinking, and part of your doctor's. We have options now, and we have the right to exercise them. There is no single, perfect antiretroviral regimen, but there are regimens that may work better for you. Don't abandon a new regimen too soon -- because most of them don't achieve their full effect for several months, and because the side effects of a new therapy often diminish over time. But don't be hesitant about switching therapies if the one you're on doesn't seem to be working.

As we write this newest chapter of the epidemic -- the first one that offers a real sense of hope -- it seems increasingly clear that the three keys to survival are compliance, compliance, and compliance. All of us need to find way to stick to the demanding drug regimens that we're now on. Being organized and disciplined -- and learning a trick or two about pill-taking -- are the surest ways to beat the virus. It's not always easy, but then no one said survival would be.

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The real experts on HIV are people who have lived with the virus for years. Their collective experience is invaluable to those who have recently been diagnosed. Indeed, it is every bit as important, to those who are just beginning to learn how to live with HIV, as new developments in diagnosis and treatment. We created PERSONAL PERSPECTIVE to give the real experts on HIV a change to share their insights, observations, and accumulated wisdom with others. If you have personal experiences that you think should be shared with our readers, please write to the editors of AIDS Care at 21 South End Avenue, Suite PH 2-I, New York City 10280-1044.

Charles Q. Forester is Co-Chair of Gay/Lesbian Founders Committee, Library Foundation of San Francisco and former Co-Chair of Human Rights Campaign.

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